UK RSD/CRPS sufferers the debate willl be broadcast here
 

What time hon? If I missed it in another post, sorry to make you repeat. There is a 7 hr time difference, but hopefully I can catch it.

It's happening at 4.30pm GMT. xx

tomorrow 9.30 am your time

Ooops it's tomorrow lol

Im keen to check this out. Im going to show this to my Aussie FB group. Hopefully it gets you guys some results and you can setthe plaform for all of us. This is fantastic for you all.

Did anyone see it? I would like to be able to know what was said but didn't get home in time.

You can still watch it here:

http://www.parliamentlive.tv/Main/Pl...eetingId=13533

Iain Stewart is introduced at about 02:19:55

Thank you for this link!!

Bravo Kevin, Bravo! Well done!! My hat is off to you sir. And like I said before you are inspiring for sure.

So what happens next?[/

Agreed...I am very impressed that you guys were able to make this happen. I don't live in the UK but I watched the debate. Not sure what I was expecting...but it is a start. Every great thing has to start somewhere and hopefully this is the start of good changes in the UK for those who live there. Very inspiring and impressive.

we got lost took an extra hour getting there agony couldn't even walk to there entrance security got a wheelchair and pushed me round to the cafe while June parked. It was only right before the start that Iain told me he was going to use my name, I asked him not to but he said he couldn't change his speech now. He was amazing much better than I expected, couldn't control it and I broke down in tears a couple of times. When the Minister spoke I realised that if he is being given false information by the professionals then it's not his fault. managed to thank the other 2 MP's and the minister stopped and spoke to me afterwards and said to send everything to Iain and he will discuss it with him.

Next week I'm going to start putting together a paper which Mr Lamb said he would go through with Iain so this is where I need everybodys help.
Ifthere is suffcent notice would you be capableand wilingto travel down to London to meet him. What do you think the first priorities should be and how can they be achieved as cheaply and quickly as possible. Are you willing to put your names to them so I don't have to be embarressed anymore

You rule!
 

For selfish reasons I would L-O-V-E to come to England! That is on the bucket list for sure. I think you pose good questions Kevin. I will give it some thought and perhaps throw a couple of thing out there that I would happily put my name to, but given that I am a US citizen I'm not sure that anything I may say would really help those of you in the UK. :(

I was telling my husband last night about your efforts and success in getting time on the parliament floor. You have every reason to be super proud of yourself! Go you!

I furthered the conversation with my husband telling him how I MUST do SOMETHING to try and contribute. I really want to do a docu. Once produced perhaps I can get airtime w/ PBS. I've worked with them before when we did some work on the docu Flight 93 about the 911 attacks. If I'm real lucky I might be able to snag a grant to help fund the project. I could also try and get it into some film festivals. Like I said before, it's a story that needs to be told. Heck I had never heard of RSD or CRPS before I was diagnosed. And even when the doc told me I had no idea what it meant. It was years later before I truly realized what the implications would be.

All this to say that your work paid off and you rule!

Vrae Start looking for a local politician you can trust no reason a good one wont understand and help.
Did you know you can start a US White House petition andif you get 25,000 in 30 days it will be discussed, I tried for you guys in 2011 but only around 800 signed. With your local and national knowledge especialy the press it really shouldn't be that hard. Will try and find the old one later for you.
One thing you can do is talk to locals make people aware before you start get as many people as you can to agrre to sign and spread the word before youlaunch it.

latest news

http://img.photobucket.com/albums/v6...ps0b6b7005.jpg

Fantastic news!! Well done Kevin :)

I just finished watching the entire debate. I thought it was extremely well presented. I urge all of you to watch this; the link is a few posts back.

Thanks Kevscar for all of your efforts to bring attention worldwide to this devastating condition!:Thank you:

I need to get my paper sent off first but from the 2nd week in August
Can you all please e-mail your MPs you can find them here, http://www.theyworkforyou.com/
Tell them your story all e-mails should contain somewhere "according to figures in a Royal College of Physicians paper published May 2012 every MP may have 760 un/misdiagnosed constituents of the worlds most painful incurable condition, please watch. http://www.youtube.com/watch?v=MviVcjWZDts and read http://www.publications.parliament.u...13070971000003
Explain that although most cases start after a fracture or operation a significant number have been caused by something as trivial as a twisted ankle or sprained wrist therefore the MP, their family and friends are all at risk of spending the rest of their lives in more pain than they can possibly imagine,
Ask either an appointment at the MP's surgery or if unable to travel a home visit so that they can see exactly how this affects not just sufferers but their families as well.
Tell them that the NHS spends over £100 million a year on cancer research but has never spent a penny on research into a cure for CRPS.
After visiting us and seeing how it affects all the family Iain really started to push for us and I think a lot more will when they know about this